Considerations For Dementia Caregivers
Dementia comes with a lot of uncertainty, and the velocity of its progression varies from person to person. Documenting end-of-life wishes and health care directives ahead of a dementia diagnosis can help guide difficult care choices that family may have to make when an individual with dementia is unable to make decisions for themselves. Creating care plans, doing estate planning, crafting living wills, and assigning health care proxies may help alleviate conflict between family members who want different things for loved ones with dementia.
Having things very clearly outlined on what the individual would want even when they cannot speak for themselves takes some of that guesswork out of it and leaves the control with the patient or the person with dementia.
Having things very clearly outlined on what the individual would want even when they cannot speak for themselves takes some of that guesswork out of it and leaves the control with the patient or the person with dementia, McCrea said. It helps. I wont say it stops that issue, but at least it is, this is what Mom wanted, or, this is what Dad wanted, and it is not up to you to change what they wanted.
Documenting wishes may help dementia caregivers navigate difficult decisions, such as:
What Would You Like To Know
Most of the participants with dementia declared they would like to know what was wrong with them or wished to get more information if they already knew. Ten wanted to know their diagnoses, 5 were interested in the possibility of improvement, and 1 wished to know more about the causes of the disorder. Sometimes they could not specify what exactly they would like to know , but some of their questions might have been difficult to answer, for example: Why me? or How long will I suffer?
How Common Is Dementia
The U.S. Centers for Disease Control and Prevention estimate that 5 million U.S. adults age 65 or older have Alzheimers and related dementia. By 2060, the CDC projects that about 14 million people will have dementia, which is about 3.3% of the population.
Alzheimers disease is the sixth leading cause of death in the U.S. and the fifth leading cause of death in Americans age 65 and older.
Additional File : Table S1
Dementia incidence with confidence intervals . Obtained from reference 25. Mar J, Gorostiza A, Arrospide A, Larrañaga I, Alberdi A, Cernuda C, et al. Estimation of the epidemiology of dementia and associated neuropsychiatric symptoms by applying machine learning to real-world data. Rev Psiquiatr Salud Ment. 2021 S1888-989100032-X. Table S2. Model parameters. Table S3. Total budget impact analysis in millions of euros with confidence intervals from 2020 until 2040 associated with the use of Souvenaid from 2020 to 2035. CI: confidence interval.
The Frontal Variant Of Ftd
In contrast to patients with AD, those with frontal dementia often remain utterly unaware of the changes wrought to their personality. The initial presentation may be subtle but is characterised by personality change, emotional problems, and behavioural disturbance. Patients may appear apathetic, withdrawn, inappropriately jocular, socially disinhibited, facetious, or unmotivated. There is a reduced capacity to demonstrate appropriate emotional responses such as happiness, fear, and surprise. Sympathy, empathy, and embarrassment are often lacking and may be replaced by impulsivity and carelessness.
The presentation is quite distinct from that seen in AD. Memory is typically unaffected early in the course of the disease with problems largely secondary to poor concentration and usually relating to difficulties with working memory. The severe amnesic presentation of AD is not the pattern seen here.
Stereotyped and perseverative behaviours may develop. Deterioration in self care with neglect of washing and grooming is often reported. Many patients develop a sweet tooth and exhibit hyperorality. Sparing of the posterior cortices means that visuospatial problems are absent until the terminal stages. Neurological signs are minimal and consist of primitive reflexes, with akinesia and rigidity observed in the terminal stages.
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Conditions With Symptoms Similar To Dementia
Remember that many conditions have symptoms similar to dementia, so it is important not to assume that someone has dementia just because some of the above symptoms are present. Strokes, depression, excessive long-term alcohol consumption, infections, hormonal disorders, nutritional deficiencies and brain tumours can all cause dementia-like symptoms. Many of these conditions can be treated.
Undiagnosed Dementia A Risk For Older Patients
By Melinda Young
Patients with dementia may be at greater risk of hospitalization and ED visits, yet many are undiagnosed or unaware of their dementia diagnosis.1
A lot of times, clinicians are reluctant to use the word Alzheimers or dementia, so they may say to a patient, You have memory loss, says Halima Amjad, MD, MPH, lead study author and assistant professor of medicine in the division of geriatric medicine and gerontology at Johns Hopkins University School of Medicine and Johns Hopkins Bayview Medical Center.
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Coping With A Dementia Diagnosis Tip : Reach Out To Others
Receiving a dementia diagnosis can leave you feeling isolated and alone. You may feel cut off from friends and family who arent able to fully understand what youre going through. You may retreat into your shell for fear of being a burden to others. Or you may even worry about how your relationships could change once people learn you have dementia. While these worries are natural, theyre not a reason to isolate yourself. At this difficult time, the love and support of others can have a huge impact on your mood and outlook.
Living with Alzheimers or another dementia is not easy, but there is help for this journey. Dont wait for others to offer support be proactive and reach out. The more support you have, the better youll be able to cope with symptoms and continue to enrich your life.
Stay connected with family and friends. Maintaining your closest relationships and continuing to enjoy social activities can make a world of difference to your health and attitude. As we age, retirement, relocation, and the loss of loved ones can often shrink our social networks, but its never too late to build new, meaningful friendships.
Seek spiritual counsel. Religious leaders can offer real comfort to believers, as well as ongoing social contact. Even people who do not regularly attend religious services may look towards religion following a diagnosis of dementia. If youre not religious, you may prefer to speak to a therapist or counselor.
What To Expect When You See A Gp About Dementia
A GP will ask about your symptoms and other aspects of your health.
They’ll also ask if you’re finding it difficult to manage everyday activities such as:
- washing and dressing
- cooking and shopping
If possible, someone who knows you well should be with you at your GP appointment, so they can describe any changes or problems they’ve noticed. They could also help you remember what was said at the appointment, if this is difficult for you.
Memory problems do not necessarily mean you have dementia. These problems can have other causes, such as:
- an underactive thyroid
- side effects of some medicines
To help rule out other causes of memory problems, the GP will do a physical examination and may organise tests, such as a blood test and urine test.
You’ll also be asked to do a memory or cognitive test to check any problems with your memory or ability to think clearly.
Read more about the tests used to diagnose dementia.
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Whats The Difference Between Dementia And Alzheimers Disease
Dementia is a description of the state of a persons mental function and not a specific disease. Dementia is an umbrella category describing mental decline thats severe enough to interfere with daily living.
There are many underlying causes of dementia, including Alzheimers disease and Parkinsons disease. Alzheimers disease is the most common underlying cause of dementia.
Anosognosia In Dementia Patients
Studies estimate that 60% of patients with mild cognitive impairment and 81% of patients with Alzheimers disease exhibit some form of anosognosia. To complicate matters further, levels and areas of self-awareness vary from person to person. A seniors lack of insight into their impairment can be selective or complete. It can also pertain to their memory, general thinking skills, emotions, and physical abilities.
The ways in which those with anosognosia react to mentions of their deficiencies vary as well. For example, a dementia patient may experience difficulty with language skills, like finding the right words when speaking. They may rationalize or explain away these situations with a general excuse about age-related forgetfulness or fatigue.
Seniors with anosognosia may also have short-term memory problems. This can cause them to forget to bathe, miss appointments, or leave food to burn on the stove. Someone who has anosognosia will still insist that theyre capable of performing daily activities on their own, despite clear evidence of their impairment.
Some may even become angry when confronted about their mental deficit because theyre convinced it doesnt exist.
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If The Diagnosis Is Dementia
Dementia is one of the health conditions that people are most afraid of.
A study by the Alzheimer’s Society has shown that more than half of people wait for up to a year before getting help for dementia symptoms, because they feel afraid. But an accurate and early diagnosis can have many benefits.
After you’ve had the necessary tests , your doctor should ask if you want to know your diagnosis.
They should explain what having dementia might mean for you and give you time to talk about the condition and ask questions.
Unless you decide otherwise, your doctor, or a member of their team, should talk to you and your family or carer about:
- the type of dementia you have or, if it’s not clear, they should talk to you about being assessed again in the future
- the symptoms and how the condition might develop
- the treatments you might be offered
- the name of a health or social care professional who will co-ordinate the different types of support you need
- care and support services in your area, including support groups and voluntary organisations for people with dementia, their families and carers
- advocacy services
- how dementia will affect your driving or employment, if this applies to you
- where you can get financial and legal advice
You should also be given written information about dementia.
Tip : Deal With Anxiety And Depression
Depression and anxiety are common among early stage Alzheimers patients. Symptoms such as withdrawal, agitation, feelings of worthlessness, and changes in your sleeping patterns can make dementia symptoms worse, though, and limit your independence. Dont ignore symptoms. As well as counseling and medication, there are plenty of self-help steps that can help you overcome anxiety and depression.
- Learning how to challenge anxious thoughts and develop a more balanced way of looking at your new situation can help you come to terms with your diagnosis and ease anxiety.
- Opening up and talking about your fears and other emotions with someone who makes you feel safe and supported can help boost your mood.
- Exercising regularly, eating well, and improving your sleep are also proven ways to help improve depression and anxiety symptoms.
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Put Your Papers In Order
Make sure all your important papers can be found easily. These might include bank and building society statements, mortgage or rental documents, insurance policies, your will, tax and pension details, bills and guarantees.
Consider setting up direct debits or standing orders for your regular bills. This means they’ll be paid automatically from your bank account each month.
Make sure you’re claiming all the benefits you’re entitled to.
In particular, check whether:
- you’re eligible for Personal Independence Payment or Attendance Allowance find out more on our page about benefits for over-65s
- your carer is eligible for Carer’s Allowance
Other benefits you may be eligible for include Income Support, Housing Benefit, Council Tax Reduction and Pension Credit.
Age UK has more about benefits, and how to claim them.
Complete Continuing Education Courses In Alzheimers Disease And Gerontology
As the population ages and the number of patients with all types of dementia increases, healthcare providers will need to become familiar with new techniques and treatments. Kriebel-Gasparro suggests that nurses can provide the best possible care to their patients through professional development and continuing education that focus on dementia and Alzheimer’s. She also recommends that nurses pursue advanced practice nursing graduate degrees that offer adult-gerontology specialties in acute care and primary care.
Several professional organizations offer continuing education credits and certification that help nurses keep current with changes in treatment and care options:
- The Gerontological Advanced Practice Nurses Association administers a gerontological specialist certification. Nurses may also choose from several continuing education options that focus on the signs and symptoms of cognitive degeneration and impairment, behavior changes, diagnosis, treatment, and management of dementia.
- Portal of Geriatrics Online provides a free collection of toolkits, competency-based case modules, continuing education courses, and geriatric nursing education materials.
- Engage-IL, administered by the University of Illinois at Chicago, provides evidence-based training and geriatric continuing education modules. The site offers free mobile apps to help identify behavioral symptoms of dementia and links to activity tool kits and national support services.
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Ethical Codes And Telling The Diagnosis
The psychiatrist should inform the patient of the nature of the condition, therapeutic procedures, including possible alternatives, and of the possible outcome. This information must be offered in a considerate way, and the patient must be given the opportunity to choose between appropriate and available methods.
But does this mean that psychiatrists have the duty to provide the information when there is no treatment? And how truthful should be the considerate way? Does it imply the whole truth? As much as the patient wants? As much as the patient’s physician believes is sufficient? The General Medical Council recommends that physicians, to establish and maintain trust in their relationships with patients, must give them the information they ask for or need about their condition, its treatment and prognosis… in a way they can understand.14 In practice, patients with dementia rarely ask for the information, and many physicians seem to think that because there is no cure to offer, such knowledge may be only detrimental and, therefore, not needed in therapeutic relationships. But can the relationships be successful without telling the truth?
Information For Your Doctor
Itâs a good idea to put together the following for your first appointment:
- A list of symptoms — include everything youâre feeling, even if you donât think it could be related to dementia
- Any sources of major stress or recent life changes
- A list of all medications you take, including vitamins and supplements, and the dosage
- A list of any questions you have
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What Are The Causes Of Dementia
Dementia is caused by damage to your brain. Dementia affects your brains nerve cells, which destroys your brains ability to communicate with its various areas. Dementia can also result from blocked blood flow to your brain, depriving it of needed oxygen and nutrients. Without oxygen and nutrients, brain tissue dies.
Damage to your brain results in different symptoms, depending on the area of your brain affected. Some dementias arent reversible and will worsen over time. Other dementias are due to other medical conditions that also affect your brain. Another group of health issues can result in dementia-like symptoms. Many of these conditions are treatable, and the dementia symptoms are reversible.
All of the possible causes of dementia are discussed in the question, Are there different types of dementia?
Establish A Routine With A Daily Care Plan
The importance of routines and familiarity for dementia and Alzheimer’s patients cannot be underestimated. Creating a nursing care plan helps to reduce restlessness, anxiety, and other challenging behaviors.
Before making a structured daily plan, nurses need to get to know their patients, taking into account their abilities, likes, and dislikes. They should consider what times of day the patient functions best and when they need breaks or distractions.
While most care plans include regular times for waking up and going to bed, meals, and bathing, they should be flexible enough to allow nurses to adjust and experiment with activities that provide enjoyment and meaning. The best care plans include activities that help patients stay connected to their pre-dementia lives, such as watching a favorite TV show or movie. As the disease progresses, nurses should make sure the activities fit their patients’ ability levels.
Nurses should also include their own self-care needs when creating a daily plan, by incorporating activities that reduce their patients’ stress and their own, such as listening to music or taking a walk.
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If Necessary Provide Adequate Preparation For The Final Stages Of Alzheimers Disease
Nursing care for dementia and Alzheimer’s patients becomes especially critical during the final stages when patients experience memory loss, depression, hallucinations, and psychosis. Kriebel-Gasparro emphasizes the importance of skilled nurses with extensive dementia and Alzheimer’s knowledge at these severe stages. Nurses not only provide treatment to patients but also help families prepare for end-of-life decisions.
While families may find it difficult to face these issues, nurses with gerontological training can help them make important end-of-life decisions. These nurses can facilitate conversations with family members about hiring elder-law attorneys and preparing necessary documents such as living wills, medical power of attorney, and end-of-life directives. They also provide emotional support to family members and suggestions for preparing emotionally for the final stages.